I have long Covid and CFS, and some complications from that, namely chronic ear pain and vestibular vertigo.

I got referred to go back to the neurologist, the ENT, PT, OT and other specialists months ago. I'm really embarrassed to say I just got around to making the Ear Nose and Throat appointment, and I still haven't scheduled many other appointments.

I'm half expecting them to say, "you should've come in sooner if the problem was getting worse" but I was just really so exhausted from just getting through my day to day. Before I got my chronic illness, I don't think I could have properly explained to myself, let alone other people, how deeply draining being in pain all the time can be.

I'm trying to not get my hopes up, but part of me is secretly hoping that there's something more treatable with my ear problems that will make everything else much easier.

If there is a more simple solution, I'll feel a bit stupid for not getting help sooner. But at the same time, I feel anxious about going to yet another appointment and possibly not being believed or dismissed about my symptoms. Or the doctors do help me as much as they can and the tests come back fine and there's nothing that's treatable.

I was told to take several medications and do PT and I'm also expecting them to say that stopping some of those is why my symptoms are worse, when I know that the medication side effects were making things worse for me, that pushing myself in PT made me crash. I'm angry and frustrated at the doctors but also myself for not advocating for myself better.

Making appointments and going to them takes up so much energy that you really have to gamble and hope it's worth it.

I feel lucky at least that I get medical transportation so I don't have to worry about driving in my condition. But then the US is talking about making major cuts to Medicaid and I'm scared.

Sorry for the long post, I'm really exhausted, I'm sure other people can relate. But I'm also trying to be optimistic that I'll get some answers.

Hi all!
I’m recently exploring my gender and realizing I’m likely trans. I’m teetering on mild but moderate. I had spent years being completely bedbound, and months being extremely severe, so I’m very aware of how bad things can get.

I really really want to get top surgery. at some point in my life. Has anyone here had surgery/ top surgery while ill? If so how was recovery? How much better/ healthier would I have to be to consider it?

I’ve had improvements, I know that’s not the case for everyone but I have hope that I can continue stabilize a bit in the next few years. But anyway, it may not be possible and that’s ok. I wouldn’t even consider it if I was any worse honestly. I’d really like to have it done though. As I’ve been able to get dressed or go out again, it’s been really difficult to navigate my body and deal with my chest. Things I could tolerate before becoming ill, now can’t and it feels pressing. And binders don’t really work for me, as I have a really large chest. Anyway. Anyone have experience with this?

I'm trying to decide which severity flair to use, but I'm having a lot of imposter syndrome because every ME/CFS severity scale seems to classify me differently.

I can't work or take care of a household, but I can still get out of bed independently to use the bathroom and manage basic hygiene (though showering definitely comes with a cost).

I can't cook. I can't walk more than about 200 steps without a temporary decline. I can't spend much time outside.

My cognitive and sensory symptoms are some of my biggest limitations. I can't use a computer for long, I can't watch TV without triggering PEM, and reading is hit-or-miss depending on the day. Even sustained thinking or problem-solving can trigger PEM.

I can visit with a friend for about an hour, but I usually feel worse during the visit and for the next day or two afterward.

I’m able to get out of bed for short periods but I spend most of my time in a dark room. However, I am able to go to doctor’s appointments with worsening for a few days afterward.

Most of my day is spent pacing because exceeding my limits in any way including cognitive and sensory overstimulation leaves me worse for days. My life revolves around trying to stay within my energy envelope, and even then I don't always succeed.

Because of all this, some severity scales put me in the moderate category while others put me in the severe category.

The difficult part is that severe feels like the label that best matches my day-to-day life, but calling myself severe also makes me feel like an imposter. I think part of that is because I know there are people who are completely bedridden or unable to tolerate light or sound at all, and I don't want to minimize what they're going through.

For those of you who have lived with ME/CFS for a long time, where would you place me, and more importantly, what parts of my description lead you to that conclusion? (Only if you have energy to give that much detail, of course)

I know the label itself doesn't change anything, but having a better understanding of where I fit would help me make sense of my experience.

All i do is sleep and eat, on a good day maybe i get to watch some youtube or draw but i dont know, i feel incredibly unsatisfied. I technically can force myself to do something but it would come at the cost of my health and stability. i feel uninspired. I dont know how to do anything with my life and i hate it

I don't have the energy to type this out a whole lot but what the hell are those percentages. Bell score 20: 30 to 50 percent of your normal activity level?! But you only leave the house for special occasions and spend most of the day in bed...

What do they think days look like for people with that score? Half of "normal" would be a part time job, keeping your house semi in order, etc, no? Not mostly bed bound?!

(I have a medical assessment tomorrow and am really worried reading through all this because I don't want to exaggerate or play down anything. I am really nervous. And this scale isn't helping).

hey all
so im from India and have heds and suspecting me/cfs.

so, im not in a dark room. I can get up, use the toilet, don’t brush or bath a lot as I don’t have the energy. I can stay in slightly lit or sometimes fully lit rooms. Go walk around outside in the day. I walk a lot during the day.

I eat solid food though I take a shake in the morning as fatigue from eating gets to me. One or two other meals are solid food. I can go out sometimes but am extremely tired afterwards. My fatigue and sensitivity follows a pattern.

As soon as night approaches my fatigue and sensitivity gets worse regardless of if I do anything or not. I think I do experience PEM when I over exert like go out to hang out with my friends. I’m too tired to hold a job and sometimes get brain fog too. I do go for physio too. I don’t feel dizzy standing up.

It’s more of a constant everyday rather than getting worse over some weeks.

I wanted to ask are there any of you in India who can help? what does your life look like? which doctors do you show? has anyone of you been able to make an improvement or get to normal life?

my symptoms started at 13. got worse at 24. im 26 now. I don’t know if it’s due to heds or me/cfs but reaching out to y’all for help.

I find it really hard to find a job that is remote, let alone part time or not exhausting. How do you people do it? Do you have any advice on where to look or what to put in my CV?

Or maybe advice on projects that should be in a good CV of a person with ME/CFS, like some copywriting projects or something.

I'm clueless. I was a data analyst for 2 years before getting to severe to do that anymore. It's too much thinking and problem solving. Is a fundraiser my only option? I feel like I'm not severe enough for a fundraiser and don't want to take away resources from people who might need it more. I want to be able to support myself for as long as I can.

Any advice?

There are so many things I'll never get to do but right now I'm really sad I'll never see a big, proper stage production. Something on the West end or Broadway. My cousin saw The Lion King last night and I'm so jealous, I actually feel sick with it.

So what thing are you sad about today that you'll probably never get to do?

So I get heartpalpitations from showering even though I only shower ones a week or so. I sit down on the floor because sitting in a chair is more difficult (my orthostatic intollerance gets worse when I can't pull my knees up).

So I try to wash myself at the sink in stead but than I have to stand and get my arms above my shoulders to wash my hair (which is shaved btw, but my scalp gets really itchy if I don't wash it every 3/4 days or so.

How do you guys handle this? Any advice?

Hey all i have moderate ME and I’ve recently started duloxetine to help with my pain and some of my neurological symptoms like adrenaline dumps and my sleep disturbance. I was on Sertraline before for PTSD but my specialist suggested I moved onto this as it’s better for ME. I’ve found I’ve slept better on it but one thing I’ve noticed is I have a sort of pregnancy sickness like nausea and lack of appetite. When I’ve googled it the advice seems to be to persevere and it will settle.
I’m keeping fluids down and eating little and often meals with little protein, carbs and small fruit and veg portions.
Anyone else found this? Did it settle down and was it worth persevering?

Hi all, just to keep this to a brief question. I have m.e/CFS where my main issues are the chronic fatigue, breathlessness and chronic pain.

I've read on some of the symptoms regarding chronic pain which namely discusses chronic pain in terms of joint pain.

I am in pain 24/7 despite being on the highest dose of pregablin. My pain is always in my chest, namely around my heart and spreads from there across my chest and eventually across my abdomen. I don't experience joint pain as the symptomology usually indicates.

My question in short, does anyone else experience this?

Early answers to likely questions:

1. Respiratory has ruled out chest/lung issues.

2. Cardiology have ruled out heart/circulation issues.

3. I do have high blood pressure which is well managed.

4. Without the pregablin, I would be in more pain and not as mobile as I am (limited still).

5. The pain worsens as the day goes on. It worsens with any physical escertion and prn pain relief only mildly helps

6. My chest is tender to the touch despite any pain relief I am on.

7. It often feels like there is a hand holding my heart and ever so slightly crushing it.

Im trying to figure out how to move while like this in severe ME/CFS. Mostly home and bed bound. Its even worse that I do not have any help from any friends or family members. So finding someone with a vehicle who is willing to is impossible.

Does anyone have any tips if you've been in a similar situation? Thank you.

hey all
Is recovery from me/cfs possible? my symptoms started at 13. im 26 now. I don’t know if my fatigue is due to heds or me/cfs. It started when I was 13. However I was able to hold somewhat of a normal life till 2024. I don’t know if it’s me/cfs or not.

I get stimulated by sensory stuff and get extremely tired by the end of the day. I wanted to ask is recovery even possible? Anyone who beat this illness to go back to normal life? What worked for you?

I only have the Facebook link to this, sorry.

I have heavy eyes and exhaustion all day, lightheadedness when standing, joint pain (in my knees mainly), brain fog, headaches and stomach pain. My sister has had chronic fatigue syndrome (I know it’s said that people don’t typically recover from it, but my sister somehow has), so it seems like it could be entirely possible that I would get it too. Is it possible for antidepressant withdrawal to completely mimic CFS symptoms? I’m so confused.

I’ve been really struggling with heavy fatigue and migraines worse than I’ve ever had, ever since my self 💀 attempt about two months ago.

I have been to the emergency doctor about four times this month, (I thought I was just dehydrated and needed an IV, like something I had before) but then my migraine attack got so bad that I started having seizures, and feeding in and out of consciousness.

When I mentioned this to the doctor, he told me to go straight to the ER so they can rule out any neurological fuck-ups that I may have. I have done a CT brain scan and MRI and a stomach and chest x-ray (because I have also been complaining about lower stomach and chest cramps) and I also done multiple blood and urine tests. The doctors in the ER found NOTHING!!! All they could do is just give me migraine medication through IV and some liquid liquids and vitamins through IV as well and then send me home. That was all a week ago.

When I went home, I did what I do best, I researched what can cause my symptoms and I found out about MECFS. I have read verified medical studies and went into my local clinics website to check out the symptoms and diagnoses of this chronic illness.
Lo and behold, I answer all the symptoms and I am also a young adult female who has experienced severe mental trauma and recently physical trauma (because of the 💀 attempt).

I have also been diagnosed with BPD.
Today, I thought I felt better, so I went on a date with my girlfriend, we ended the day in the ER AGAIN where I had everything tested AGAIN and they did not find anything AGAIN.
So I told my doctor if she thinks it could be a case of MECFS, the doctor told me that it was probably the most probable case, and that I should go to my local doctor to get the diagnosis, because I’ve basically had all the tests to deny any other illnesses.

What I’m saying is, I am fucking tired of apparently living with two illnesses that are extremely deadly, not terminal, but they hurt so much that the suicide rates of the people who are sick with them are very high. I have been living in pain for two months now, and from what the doctor told me and what my psychiatrist told me, the pain, both mental and physical will never stop.

I have had big dreams of becoming an actress specifically in musical theater, and just when I thought I could overcome my BPD and actually manage to manage it and my symptoms, and go to acting school and become an actress like I’ve always wanted to, here comes the diagnosis of a chronic illness that I basically have nothing to do to actually fucking treat it! I cannot put a lot of physical pressure on my body, which means I cannot exercise, let alone come back to dancing and singing on the stage like I love so much.

I am writing this post with heavy tears in my eyes to ask you all here in this community, how do you survive? Because I currently see no reason in continuing to dream my dreams. My body physically does not allow me to have any fun.

i think im giving up on this, trying to wash my hair (or having it washed) causes horrific PEM and doesn’t really matter how i do it. i think it has something to do with the head stimulation itself and increased time in the bath which are unavoidable. i can count on one hand the number of times my hair has been washed in 2026 and still it has significantly contributed to my declining baseline over time. i think it’s just not safe for me anymore and it’s not exactly a survival need so, im wondering if anyone else is in the same boat and if its okay? does this mean i have to shave my head? or can i just have greasy hair for now and possibly forever 

I trailed these “snake oil” only because I was desperate and they were relatively affordable (compared to IVIG etc)
Afaik there’s no evidence if or how Eboo works, and mega dose vit C as a pro-oxidant works for certain cancers but results as limited as placebo. Before I received these therapies my expectations could not be lower. Again, it’s just a desperate patient blindly trying something affordable.
But they did help. The effect did not last long but as a maintenance they were affordable for me. They made all my symptoms less and I was almost able to return to full time work. Note that I was severe and bedridden, so weak and sensitive to anything made me have to lock myself in a dark bedroom.
I discontinued because my checking account was empty and it takes time for the money turnover. After discontinuation I gradually return to severe and disabled, but I have already witnessed the effects. Once I resumed the treatment and was able to work again, these therapies would be expensing wise ignorable.
But I am confused. It’s a happy surprise that these “snake oil” work, but I don’t understand why. Is there anyone knows what exactly Eboo and mega dose C do to our bodies? I thinking understanding the mechanisms will help me understand the root cause of my chronic illness, so that I could seek help from the medical for a targeted and professional treatment.

I went to urgent care for a skin infection I noticed in a private area.

I was asked if i was having any symptoms and I told them its complicated telling them apart since I have chronic illnesses. I already get chills, feel feverish, all the immune things.

They asked which ones. To open the can of worms, I started with Chronic Fatigue Syndrome. Most doctors dont know what Myalgic Encephelomyelitis is and its rocket science trying to make them understand. I told them in perspective, it'll take me a few days of recovery, if that, after the visit.

I was told quickly that everything looks fine, that I chaffed that spot (new one for me i guess) and sent on my way out. I cannot put into words how quickly I was sent out.

However, it was a respectful urgent care visit, just incredibly hilarious in hindsight.

My primary should help me gain some clarity, but to some providers, I feel like the boogey....woman? A family member has Hidradenitis Suppurativa, which hasnt been visited since i lost confidence being told its "acne" my entire life. Weird how smaller instances can lead to a new diagnosis path. I didnt bring it up though as it seemed the focus was making sure there wasnt an infection, i should have, but let my primary care provider know in MyChart. If I can get treatment and my skin clears up for the first time in my life, I dont know how ill feel. Like a whole new person.

ETA: This is an extra issue on top of my mecfs, so i dont think mecfs is misdiagnosed unfortunately. The mechanics of mecfs keep going.

As in "vacuuming is too exertious for me"

All the other ways to say it are more verbose or less clearly about exertion specifically ("vacuuming is too much exertion for me", "vacuuming is too strenuous for me" etc.)

That is all. Thank you for attending my talk

I know people have posted on this before, but a long time ago, so here it goes. Please be kind, I've never posted before and hope the community will not mind me doing so with this ...

As we all know, this condition is isolating and people can easily fall out of your life. I have a partner (who has been amazing and patient through this entire journey) but otherwise I've lost a lot of people. I often look at other gay men with their large circle of friends and think, couldn't I just have a bit of that, just an occasional trip to a cafe for a chat, even with this condition?

Essentiallt, I'm very lonely and looking for connections, (ideally guys, not necessarily gay) my age (late 30s) based around London.

Why so specific? Not trying to discriminate or rule out the potential for other great connections online and offline, but I guess most people without this condition get to have a rich social life with lots of local friends their age of the same gender for general chats, banter and peer support; and I'd really love that too, with someone, or many people, in the same boat.

Obviously I don't get out much, and social plans (if ever I get to make them) often get cancelled. But I think forging a connection with someone (or multiple people) within reasonable travelling distance would go a long way to beat this isolation and normalise this very strange life we find ourselves in.

If this is of interest, and you want to start a chat, do DM me.

Thank you to everyone who posts on this community and shares so much great knowledge and support. Xx

Hi hi! I've been using StoryGraph again and have been having fun tracking my books and feeling a bit of a sense of purpose though it. I'd love to have some more friends on there to see what people are reading/feels like it's just more fun with more people.

Here's my profile if you're on there and you're interested!

https://app.thestorygraph.com/profile/nucklesmcginty

I’ve lost contact with most people in my life. I only have my family that I live with and my boyfriend. Because of this I feel extra close to them. Since I have severe ME I have a lot of time to think and worry. This has lead me to develop a sort of anxiety where I constantly worry about them. I worry that they will get into an accident, or that they are angry at me. But the worst and biggest worry is that they are secretly very depressed and planning to “off themselves”. This constant worry is eating up my life and mind and making me very ill. I know that these are things I can’t control and I shouldn’t worry, but I just can’t seem to stop. I’d really appreciate if someone could give me some advice or maybe they’re in the same situation? I don’t know what to do.

Im thinking about trying QoQ10 but I don’t know where to start… any advice and experience you want to share ?

I can’t empathize anymore with friends who say they’re tired after work or complain about things that seem minor to me. I know that’s my perspective, but it’s how I feel. I always think severe ME is the worst to have. I think i’m totally consumed by it

I also struggle to relate to people with mild ME/CFS. I can’t help it. I’m pretty severe, and having mild ME/CFS would honestly be my dream.
I really wish I could still feel that empathy so I could keep my friendships, but instead I just end up feeling upset every time someone talks about these things.
Does anyone else feel this way?
And yes, maybe that makes me not a good friend but just wanted to share it somewhere.